Undiagnosed 5 year old boy

[tommysmum204]

Hi all, I don't know how to make a long story short but I will try. My little man(and i say little because he has growth issues - born 8 weeks prem but 25 % for gestation was always 3rd % for weight, 4 % for height until he was 3yrs old, now after a year of zero growth he's 1 % weight and 2 % for height) has suffered recurrent bouts of diarrhea since before his 1st birthday, but we were told multiple times "virus", "gastritis" and with my reluctance to waste Doctors time I just did my best to manage his symptoms when they occurred - he would have a bout almost monthly. Fast forward to October last year he had a major "viral Illness"- (I loathe the words viral illness now!!) which was 2 weeks high fever 2 weeks low fever, "viral conjunctivitus", bleeding swollen gums and arthritis. We are now in limbo with an undiagnosed arthritis, he was diagnosed with Uveitis a month after his "viral illness", and his GI issues slipped off the radar, until his ped mentioned that his growth cannot be due to malabsorption because Tommy doesn't suffer from diarrhea?? With a big lump in my throat I told him about his long term diarrhea I just assumed was normal for him and which he had actually had when in hospital with "viral illness" and his diarrhea had been tested even. So his ped is now querying IBD we have had a fecal occult and calprotectin test done and awaiting results on those. His symptoms for the longest time have been - of course the recurrent diarrhea, painful bowel movements even when motions are soft, mucousy stools and daily nausea and pain just below the belly button. And I am now riddled with guilt that I have largely ignored his symptoms but he is such a tough little man that he very rarely complains of much, I hate to think that he is just so accustomed to pain that for him it is normal :frown: does anyone have littlies that have had similar presentation of IBD, any advice is greatly appreciated

 

[Catherine]

Welcome to the forum sorry you had to find us.

We had multiple trips to the doctor over a four year period for gastro but we did not have any bowel symptoms just severe pain.

It's hard waiting for results. Calprotectin here usually takes about 10-14 days.

 

[Mehita]

Lack of growth here was the primary symptom. I think whether it's IBD or not, something is definitely going on with your son. Now you just need to find a doctor who will help you figure out what it is.

Has he been tested for celiac disease or other food intolerances? Has he had other labs run beside the stool tests?

One thing that might be useful is to track his symptoms on a calendar. Sometimes when you're living in the midst of it, it's hard to see how things are, but if you go back later over a months time for example, you might note 21 bouts of diarrhea in 30 days or two weeks worth of fevers.

Hang in there, momma!

 

[Farmwife]

Hi and welcome.

I also know the guilt feeling. 2 years my little farm girl struggled with painful sleepless nights and I wrote it off or believed the doctors even though my mommy gut was saying something else.
Her issues started at 3 moths old and never completely went away.
The only thing that showed her disease was a scope at the age of 3.
At 3 she was dx with IBD (microscopic) and at 4 she was dx with Juvenile Arthritis.

I'm so glad your getting the stool tests done.
Has he had blood drawls? Any levels off there?

Just FYI, my Grace NEVER showed any problems in the stool test or labs.
It was only the scopes that showed it.
Sometimes these young ones can be more tricky to dx *if* he has it.
I pray he doesn't and if he does that he gets better soon.

 

[tommysmum204]

Thanks for your replies. Yes he has had blood draws done, when he presented with the arthritis he was tested twice weekly for 3 weeks. These came back through the roof inflammation wise and low for hemaglobin and iron, but started settling towards the end of the second week, he was put on high dose ibuprofen in hospital and his arthritis started to settle after 3 weeks. He has had regular blood draws since and they are all within normal limits. I have taken him off ibuprofen several times over the last 7 months and have currently had him off it for 5 weeks. The rheum is puzzled by his case because he overlaps several auto immune diseases and we are waiting to see what transpires over time. She said his gut issues could be caused by Ibuprofen so we are giving him a break. She also said all of his other issues can be caused by the gut :yrolleyes: i'm dizzy His tummy issues have actually worsened over the last 5 weeks off the ibuprofen. The arthritis is no worse off ibuprofen, he still gets morning stiffness and limited ROM when hes been inactive awhile. His eyes settle on pred forte but when we attempt to wean it flares again. I don't think he has been tested for celiacs or any food intolerances, however I tried an anti-inflammatory diet for 2 months and he lost weight.....which is really bad when he is only 1 % for weight already so due to that and it not helping at all I put him back on normal diet but added a supplement shake similar to pediasure 2-3 times a day and thankfully he gained it back quick, i have continued to give it to him and he has had his 1st gain in a year and a half of 300gms!! Small steps.